Happy New Year!

Once again I’m here as the year ends with the thought that I’ve not blogged much this year.


2017 on the face of it should be ending with a comment about it having been a better year – certainly there have been far fewer deaths and no real personal crises. Or at least not the major wheelchair related ones there were in 2016. But, mostly thanks to depression it has been a tough year.


I said to my GP a while ago that I thought being back on antidepressants was helping but that circumstances weren’t. More than half of this year was spent with one major situation needing to be resolved but my disability made that impossible. In the end I walked away. And currently I’m battling systemic ableism in a way that is making my depression worse. But that’s another story. I will say that this year being disabled has caused problems in a way it hasn’t for many years.  And sadly I know I’m not alone in that with society and public services being the way they are.


That’s not to say this year has been all bad. I finally went to Bletchley Park after many years of wanting to and loved it. The Harry Potter exhibit at the British Library was incredible. Yesterday  we had a fine dining meal at Newbury Racecourse for Dad’s birthday.  Dad and I also went racing at Ascot in October. We went to a lot of shows, most were good, some were amazing and one or two were terrible. I saw all my extended family this year, spent time with friends and drank some yummy cocktails.


Happy New Year to everyone reading this!

Hygge and Kisses by Clara Christiansen

I received a free copy of Hygge and Kisses by Clara Christiansen from Netgalley to review. Reading other reviews, it seems a lot of people only received a sampler.  I was lucky enough to get the whole book.


Bo, 26, has always been careful, cautious. However, she’s just been made redundant and her life plan is beginning to unravel. Before she starts immediately applying for other jobs in a panic, her friend Kirsten persuades her to take a holiday, to visit Kirsten’s mother’s house in Aalborg, North Jutland, a part of Denmark Bo is ashamed to admit she has never heard of.


‘What’s the weather going to be like?’ she asks Kirsten hopefully, scrolling her cursor over the budget airlines webpage. ‘Terrible,’ Kirsten replies, ‘London is positively Mediterranean by comparison, and of course it’s November so it’ll be dark seventeen hours a day. But no one goes to Denmark to get a tan. You need a change of scene and to blow away the cobwebs, and trust me, Skagen will do that. Besides, the summerhouse is cosy whatever the weather, and you never know who else will be around.’


A few clicks later and there is no going back.  Ug .   Bo’s life plan is about to be entirely rewritten.


I started reading Hygge and Kisses on the train and knew within just a few pages that I was going to enjoy it.  It just had a lovely feeling and grabbed my interest straight away.  When it was time to get off the train I was torn between wanting to keep reading and excitement about my plans for the day.  I ended up reading the whole book in three sittings.


The section in Denmark left me remembering my own trip there as a child and thinking about going back.  Unlike Bo we went in the summer so my experience is very different to hers.  I am undecided if I’d like to go in winter like she does.  (Nobody ask where in Denmark we went as I was 8 at the time and can’t remember).


Goodreads says this is about 400 pages long.  I am surprised by that because I genuinely thought it  was shorter (the kindle edition I have has no page numbers).  But that might just be because I read it so quickly. Certainly I would have liked it to be longer because some plot elements were brushed over and just got mentioned in passing where I would have preferred to see them properly.  And although I thought the ending was good it was abrupt and I was left regretting the fact there was no “six months later”epilogue as I wanted to know what happened next for the characters.  I’ve been thinking about that a lot since I finished the book and I have a theory but as it would spoil the book I won’t share.


I would recommend Hygge and Kisses for anyone wanting a relaxing read with a feel good vibe.  In the spirit of Hygge, it should probably be read on a winter evening while curled under a blanket.

Mini Book Reviews

I have written several times this year about struggling with my mental health.  I described it a while ago as being somewhat functionally depressed. If I have to go somewhere or someone is expecting me it happens. If there isn’t a set plan things have varied this year between “it’s not going to happen” and “after a fashion”


Reading has been perhaps the hardest thing in that because for quite a while I just wasn’t managing to finish books. Lately that’s improved but despite reading several fabulous books and wanting to review them I haven’t managed that part.  I have been wondering if I should give up reviewing books but when I’m well I really enjoy it.  So i decided that instead what I need is a clean slate.  I’ve been going backwards and forwards on whether that means a new blog just for reviews and still haven’t come to a conclusion.   But I did decide that I would post several mini reviews all together.  And as a sign of how things are I wrote these and then had problems posting to my blog so there’s been a gap of several weeks. But, at last, here goes.


Goodbye Vitamin. By Rachel Khong.


It’s much too early in the year to declare best book of 2017 but I think this is a real contender for the title.  Goodbye Vitamin really surprised me.  It had a lovely almost feel good style that was a bit unusual. And it managed to take a very difficult subject (a parent with Alzheimer’s) the focus of a lovely enjoyable book with humour and good times.  It felt very real and I am keen to read more by Rachel Khong.


Forever Geek by Holly Smale.


I feel bad that I’m not writing a full review for this but I have reviewed most of the others in this series and I think my love for Harriet Manners and the other characters in the Geek Girl series is well recorded.  As always I loved it and can’t recommend it highly enough.  It had moments that made me smile and laugh and others that made me cringe – typical Harriet. And lots of random facts.


Practice Makes Perfect by Penny Parkes


I think Penny Parkes is fast becoming one of my favourite authors. I started reading this on the train to meet a friend for the afternoon and once I got home kept going until I finished it.  I love reading a whole book in a day but very rarely find a book that makes me do that anymore.  Returning to the adventures of the Doctors of Larkford this has everything I love in a book.  If I had to pick one of the books in this entry as one I’d recommend to anyone and everyone it would be this one. I read this before publication day and for the first time ever was really jealous of those tweeting their excitement to read it on that day because I just enjoyed it that much.


Annie’s Holiday by the Sea by Liz Eeles


Sunshine and unexpected happenings in the seaside made this the perfect summer read.  I particularly liked the moments with the choir as although I really can’t sing I love music.  It was just fun and enjoyable with enough substance to fulfil my lazy day wishes but keep me guessing and wanting to read it.  There’s a Christmas sequel and I will definitely be reading it.


Coming Home to Cuckoo Cottage by Heidi Swain


I’ve read and enjoyed all of Heidi Swain’s Wynbridge books and this was no exception.  They are well written and always fun with characters I can relate to.  I enjoy the way each book brings new characters and tells their story but allows us updates and glimpses of the ones we loved from previous books,  Oh and having been felling one of my friends that she would love these books since the first one was published she finally picked one up and then blew through all three others in a short time. If that doesn’t tell you how good they are, nothing will.


The Lemon Tree Cafe by Cathy Bramley


I am never sure whether i want to read Cathy Bramley’s books in their instalments or wait for the whole book. I want to read them instalments because I love her books and don’t want to wait but then I enjoy being able to get stuck in to the whole thing.  I read this as the whole book over two days.  In fact I sat in the garden one day and read well over half of it.  This might be my favourite of Cathy Bramley’s books since Ivy Lane.  I really liked the main character, Rosie, and I loved her Nonna.  This was full of unexpected humour, a return visit from a character from a previous book, a twist I didn’t see coming and a visit to Italy that made me want to go there myself.


Ticking Along

Things are ticking along slowly.

For so long I struggled to read but that suddenly kicked in and now I’ve read more both in actual books and in pages read than I did in the whole of last year.

Then I was struggling to crochet or knit. Until I spent an afternoon at my parent’s house a couple of weeks ago while my flat was being painted. Mum made me stop talking about the project I wanted to do and actually make a start on it. Then the next day she asked if I’d done more and when I said no told me to do some and then send her a photo as proof. That was two weeks ago and I’ve worked on it everyday apart from one. It’s half finished and the second half will take a lot longer (done in rounds and each is larger than the last) but I’m pleased with it and it’ll get there.

I haven’t been reading as much whilst I’ve been crocheting as it kind of feels like I maybe don’t have the concentration to do both – I’m spending a lot of time online and needing it (or was until I broke my ipad yesterday) – but equally that could simply be because I picked up a book I’ve been really keen to read having loved another by the author and heard good things and it’s OK but I’m not as enamoured as I expected which is a little disappointing.

The really big thing that I want to be doing but aren’t is writing. I did write about 100 words of one of the many pieces I have in mind earlier whilst waiting for the wheelchair tech but then deleted the lot because it just felt clunky and wrong. I’ve since thought about it (whilst crocheting, I swear some of my best writing moments are when I’m nto writing) and I think I took the wrong tack. It’s not unusual for me to end up deleting a first attempt completely.

And I went back to the wheelchair clinic and they sorted my chair out. So that’s a major stress sorted out and everything else is sort of ticking along even if it’s not good.

There used to be a TV show (or maybe there still is, I never really watched it) called Modern Life is Good Ish. And that feels like (if you take the modern away) a good way to describe things right now.

Random Bullet Points of Life

Random bullet points of life are for the little things worth recording but probably not in need of an entry to themselves. I actually think several of these should have an entry to themselves but in the interest of catching up a bit and not forgetting things this will do.

+It’s so long since I wrote a blog update! Lots of thoughts about blogging lately and probably some stuff to write about it but not today.

+ My new manual wheelchair has been a bit of a disaster. I couldn’t use it at all for the first two weeks I had it as it wasn’t safe. It’s still not as safe as it ought to be and it’s horrible to use. I’m going back to clinic next week but I suspect the outcome won’t be brilliant.

+ I’ve had my Jive (powerchair) for a year now! I did 1069 miles in the first year and wore a pair of tyres out.

+ I got my chair serviced and the tyres changed and then two days later (after the tech who did the service gave me a sheet of paper on which he’s put the results of the service and written “chair working well”) I went to Reading and part way round I thought “something isn’t right.” Got home and discovered one of the castors was fucked. And panicked because it was the one that broke earlier in the year and that took forever for parts. But the tech came back straight away and it turned out it was just a bolt that had sheared.

+ I then had the tech out again a few days later because I didn’t think it felt right. I sent the company a video and they had a play with their chairs and a couple of others and looking at those and my video they thought it was fine but insisted on coming back to be sure. It was fine.

+ Having not seen my Mum’s family since my sister’s wedding in 2015 or my Dad’s family since last year I got to see both within a week. It was a lot of fun.

+ Talking of things that haven’t happened since 2015, I had a UTI. But bizarrely three days of twice daily antibiotics did the trick. I really didn’t expect that as it was a low dose short course and my history suggest I need more than that.

+ I am still not able to go sailing. Goal posts have moved on that a couple of times and whilst I agree things needed looking at for safety sake it was all badly handled. I told them that I won’t be going back this season and only may go back next season. At the moment I don’t expect to go back at all but never say never.

+ The paraathletics we went to see in London was very interesting. We saw a lot and I enjoyed it but I think I enjoy team sports more because they tend to have more of an atmosphere and I really like the atmosphere.

+ I’ve been looking into the possibility of going to watch the wheelchair tennis at Wimbledon next year but that may be tricky because you book for Wimbledon and get what you get. We can’t guarantee getting into any of the wheelchair tennis which is brilliant from an inclusion point of view but also a bit of a shame because I’m much more interested in seeing the paraathletes play than any other games.

+ I had a week off and went to Birmingham twice (to see a uni friend and go hunting for some of the art in the wild Big Sleuth trail and then to see Miss Saigon with another friend) and to Bletchley Park. I met friends there and really enjoyed it. It was a very long journey though although relatively easy. It was just a bit gutting when my friends who’ve recently moved away from Oxfordshire and are much closer now said it would take them 20 minutes to get home and it was going to take me 3 hours!


The Changing of the Guard.

In just over 12 hours I have an appointment with wheelchair services to have my new wheelchair fitted.  If all goes according to plan it comes home with me and my action 3 stays there.  Policy is that wheelchairs returned to them go to the workshop and get refurbished before being reissued.  I doubt they’ll even bother to look at mine because the reality is I use my wheelchairs to death before they get replaced and it’s fit for nothing but a trip to wherever it is dead wheelchairs go when they’ve served their time.

I’m looking forward to it and very hopeful that the new set up will be better for me.  And I’m really looking forward to having a wheelchair cushion for my powerchair and one for my manual again after six weeks of just having one and having to switch it every time I switch which chair I’m in.  I went for another Jay 2 Deep Contour in the end if anyone is wondering.

This is the longest I’ve ever had a wheelchair for – Facebook told me that my assessment for it was 8 years ago this week and it took another three months to come after that – and I’ve been feeling a bit introspective this evening. I talk about how my manual chair is for home (mostly) and I use my powerchair for going out. And I had decided that I’d like to do more going out in my new manual. 

But thinking back over the last 7 and a bit years it’s done a lot more than help me at home. I’ve used at funerals and friend’s weddings. It went to Birmingham for a three day conference, London for an awards ceremony and Cardiff for my sister in law’s hen do. I was in it when I went to the hospital to meet my nephew. It got me on theatre trips, shopping and to many other things. I’ve used it (and abused it), fallen out of it, done many a thing my wheelchair team would disapprove of, been told that the repair team like coming to me because I really use my chairs and they know whatever I’ve done I’ll have enjoyed it. And basically lived.

My chairs are a part of my body. Always there, always working to keep me moving. My powerchair is the hero, the one people see, and the one that does the big stuff. It’s the celebrated one and people worry if I’m not in it.  My manual chair that’s the quiet one in the equation that allows me to live and thrive as an independent woman. But it’s a key role, unseen but oh so necessary.  I need it as much as I need my powerchair and I can’t wait to see where I’ll go with the new one.

A blonde haired toddler having a go at pushing a woman in a green fleece in a manual wheelchair(This is one of my favourite pictures of me in my manual. I went to Millets Farm and having seen his Daddy pushing me my nephew decided he wanted a turn.)

One Summer In Tuscany by Domenica De Rosa

Today I am kickstarting my return to book blogging by taking part in the blog tour for One Summer in Tuscany by Domenica De Rosa. And I don’t think I could have picked a better book!

Patricia Wilson’s carefully composed ads for the writers’ retreat she runs at her thirteenth-century Italian castle promise so much. But while the splendour of their surroundings and chef Aldo’s melanzane never fail to wow the guests, huge maintenance bills and bad news from the bank threaten to close Patricia down. It’s make or break time for the Castello.

Each of her seven aspiring authors arrives with the inevitable baggage alongside their unpublished manuscripts. But this August something is different, and soon lifelong spinster Mary is riding on the back of Aldo’s vespa, and smouldering odd-job man Fabio has set more than one heart racing.

As temperatures rise, the writers gossip, flirt and gently polish their prose by the pool. But with ghosts, scorpions, and some unexpected visitors to contend with, one thing’s for sure: neither the Castello, nor Patricia, has ever seen a summer like this.

I think this is probably going to be a short review because I really enjoyed it and don’t want to spoil it for anyone. In fact you should all just ignore the rest of this review and go buy yourself a copy to read instead.

I will start with two things. The descriptions of the food in this book were amazing and left me really hankering for some Italian food, specifically a big bowl of pasta with a glass of wine on the side. If you can, those would be the perfect things to have whilst reading One Summer In Tuscany.

And as much as I really found the creative writing tutor to be a bit of a “love to hate him” character some of the things he said about writing in the book made me think and made me want to pick up my own long neglected novel attempts.

One Summer In Tuscany was the perfect book to lose track of time with on a warm summer day in the garden. If, like me, you aren’t getting away this summer it’s the next best thing to an actual trip to Italy and I highly recommend it.

A wheelchair related thought

I’m very excited about my new wheelchair coming but talking to other people about what I’m getting and why and how wheelchair services works has been interesting.


There’s been a definite difference between how other disabled people have taken the news of what chair I’m getting (generally very positive) and how able-bodied people have taken the details of what chair I’m getting (quite negative but in a way that I suspect they think is supportive). At times this has been frustrating and even difficult. I won’t go into any more details because this isn’t meant to be a criticism of anyone or anything.


It’s been eye opening and it’s something that I have been thinking about a lot as there are parallels to a situation I see at CAB often but I’ve never really got before now.  I still don’t think I get it but I can see how and why it happens more now.


A new chair

I’m getting a new manual wheelchair provided by the NHS.

I had an assessment with a rehab engineer and an OT today.  There was some discussion and after a few minutes I said “So I am getting a new chair then?”

And the engineer who is someone I’ve seen in clinic before said “Emma, the only reason we’re letting you go home in that chair is because we don’t have anything here to lend you and we can’t send you home without a chair. If we had something else you’d be in it.”

They also got a new type of cushion out for me to try and the OT declared she didn’t want me taking my old cushion home so sent me with the trial one. That’s a Qbitus Q-Care Integra 2. I’m to ring her tomorrow and say if I want to keep using that or to have a new one the same as I had which was a Jay 2 Deep Contour. Currently undecided on that.

So I’m getting an Invacare Action 4 – this is next one up from the Action 3 I’ve had since 2009 but looks all but identical. The change is due to my weight. I will have new lateral supports and solid back, identical to what I have on this (Jay J3 backrest). Something was mentioned about a higher back but I lost track of what was decided. Slightly deeper seat and elevating leg rests in the hope that will help with both spasms and lymphoedema.  It’s coming in my preferred black.

I knew my chair was desperately showing it’s age but it was working. I had been relatively sure my cushion had had it.  But I really hadn’t expected them to be completely horrified by the state of things.  It’s been made very very clear by both of them that I need to be keeping in much better touch with the hospital based wheelchair team and that this replacement should have been done about a year ago. Although I did tell them that last summer I saw one of the mobile team for a repair and commented about a new one but he basically said budgets meant they didn’t get replaced until they couldn’t be repaired.  

I’m very excited for my new chair – they are marking the order as urgent but no one is sure if that will make a difference. Still hopefully by August I will have it.

Not five minutes but five weeks

Today is Blogging Against Disablism Day.

For the last five weeks I’ve been dealing with a somewhat ridiculous access situation.  What I actually need should be incredibly straight-forward. I need to be weighed.  I am not allowed to go sailing until I can confirm my weight to the powers that be. That’s because they’re checking equipment safety. I have no problem with that. 

You can buy scales in Argos for less than £30. But as a wheelchair user it’s not accessible to me. The accessible scales you can get cost over £1000. You can go to the GP to get weighed. I can’t. There isn’t considered to be a need for accessible scales.

 I’m told I don’t need to be weighed,  I can track weight gain or loss through measurements or how my clothes fit. I’ve been having versions of this conversation for years.  But I do now need to be weighed.  To keep me safe and more importantly to keep those helping me at sailing safe.

This whole situation is ridiculous. No one who might be in a position to help seems to want to help.  Those who offer help can’t do anything. 

People have led me to believe access was available when it wasn’t. People haven’t understood what I need and then got annoyed when I corrected them. I’ve been asked three times in the space of one phone call “you cant stand on the scales?” I sent an email to somewhere that we think can help and their admin person replied that they had passed my query on to the relevant person. This is somewhere that request email is used if possible.  Three weeks later I chased it and got what boils down to “you know we’ve had your email, shut up and wait” in reply.

I don’t usually have “if I wasn’t disabled” on my radar. It’s not healthy and it’s not necessary, as a CPer life on wheels is all I’ve ever known. But there is no escaping the fact that I’m currently five weeks and counting into trying to find a way to do something that were I able-bodied could have been done in five minutes or less. And I don’t know when it will be resolved.